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ResourcesResearch IntegrityThe Importance – and the Complexities – of Data Sharing (Papers: Jeffrey M. Drazen, M.D. et al 2016)

Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)

The Importance – and the Complexities – of Data Sharing (Papers: Jeffrey M. Drazen, M.D. et al 2016)

 


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We at the Journal are committed to making the sharing of clinical trial data an effective, efficient, and sustainable part of biomedical research. This issue of the Journal includes three Perspective articles on the topic of data sharing. Grossman et al. describe the Genomic Data Commons, which will initially house raw genomic data and diagnostic, histologic, and clinical outcome data from National Cancer Institute–funded projects.1 Lo and DeMets recommend steps for addressing clinical trialists’ primary reservations about sharing their data.2 And Rockhold et al. consider progress to date and a path forward that could avert the creation of a fragmented data-sharing landscape.3 In August 2016, we published four Perspective articles on the same topic — two by experts who favored rapid open access to clinical trial data and two by other experts who were more reserved in their enthusiasm, focusing on the hurdles to be overcome.4-7 With these articles, and with others to come, our goal is to bring to the table a wide variety of opinions about the value, risks, unknowns, and rewards that accompany data sharing in the context of clinical trials. We firmly believe that complex issues are best clarified through open discussion and the airing of various viewpoints. Only by seeing the issue through many sets of eyes can we achieve the clarity we need to move forward. We hope that you will read each of these pieces with this idea in mind. Our enemy is disease and the human toll it takes. We need to use every means possible to come closer to vanquishing the real foe.

Drazen JM, Morrissey S, Malina D, Hamel MB, and Campion EW (2016) The Importance – and the Complexities – of Data Sharing. New England Journal of Medicine. 375 pp1182-1183 DOI: 10.1056/NEJMe1611027
Publisher (Open Access): http://www.nejm.org/doi/full/10.1056/NEJMe1611027
Interview with Jeffrey Drazen: Listen | Download



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